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Post Mastectomy Peau d'orange - IBC Concern and Questions...

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I had a mastectomy in October 2023 following a DCIS diagnosis. It is now Feb 2024 and my swelling has not subsided. Despite asking why my swelling had not gone down and being told by my plastic surgeon that there was no cause for concern, my gut told me to cancel my final reconstruction surgery and demand a look at my still swollen orange peel skin.

The plastic surgeon now 'recognizes that this is an issue' and has sent me back to the surgical oncologist. I won't see her until Monday, but I'm seething with anger that my gut was right and I wasn't listened to. Is it common to have post-mastectomy swelling when the spacer is too large for your breast? I know Monday will come, and all the fun biopsies will begin again, but I'm feeling so defeated, alone, etc. I was fired from my job for all of the surgeries, it ripped up my family dynamic, and just when i thought things were over, i feel like I'm going to have to go through everything again.

I never got radiation; they opted for mastectomy and reconstruction. I don't have the braca gene, and the mastectomy tissue tested negative for cancer… is it likely i still somehow have iBC. I know no one here is a doctor, but I'm just at such a loss… I don't know what else to ask, do, or say and wanted to turn to anyone for insight.

Comments

  • mavericksmom
    mavericksmom Member Posts: 1,255
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    Hi mommytheestallion! I am sure others will comment soon. I had breast cancer three times, the last time I had a mastectomy (no chemo or rads) with implant reconstruction. That was in October of 2022. I was very red/swollen for a long time, just how I react. I also got a horrible rash from xeroform, a type of bandage they used when I had my exchange surgery in March 2023.

    What I am saying is that you are right to have this issue investigated. Better to have it be nothing than to let something important go. On the upside, it is more likely to be nothing, but I don't think that thought ever helps any of us worry less when we are dealing with issues.

    I am really sorry you lost your job! I can't imagine how that feels. It doesn't feel legally right to fire someone for too many surgeries, but I guess it depends on the job. I ended up retiring a bit earlier than I wanted, but that was my choice.

    I hope when all is said and done, and you get this issue resolved, you are able to get a much better job! If it helps, I do think things happen for a reason, even if we don't understand what that is. Either way we have to deal with reality and that can really be very difficult at times. I am also sorry for the stress on your family!

    Wishing you well tomorrow when you see your doctor! Please continue to post to let us know how you are doing!

  • moderators
    moderators Posts: 8,287
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    @mommytheestallion we're so sorry to read all you have been through, and are going through. We really hope you let us know what they find out. Well done for advocating for yourself! No easy feat. We're here for you!

  • ava55
    ava55 Member Posts: 42
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    Sorry to hear that and about your job, so hard. The fact it wasn’t IDC or IBC is a real positive. I had DCIS 8cm and they found 5 mm of IDC following a mastectomy.

    I had swelling last year same side as mx and one ultrasound was clear last year but just last month following another ultrasound they found an enlarged lymph node.. They are doing a cat scan now too. I would ask for all the tests to reassure and set your mind at ease (ultrasound biopsy and cat scan) and ask in advance as soon as you can so there isn’t another wait.

    The hard part is no one knows right now what it is, even the Doctors until you have a biopsy and a scan. It sounds like an operation side effect and there is the fact that you had no IBC. The real positive is that you only had your mx in Oct so this is still very early and a mastectomy is a radical op. That’s a lot of positives in my book. Hoping all will be ok for you (and me!). Waiting is awful and hard to be back here again but keep busy. Xx